Life With Breast Cancerhttp://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer
Sage advice from a breast cancer survivorFri, 11 Aug 2017 06:18:52 +0000en-UShourly1http://wordpress.org/?v=4.2.2What It Means to Be Your Own Patient Advocatehttp://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/what-it-means-be-your-own-patient-advocate/
http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/what-it-means-be-your-own-patient-advocate/#commentsMon, 23 Jan 2017 02:00:40 +0000http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/?p=4167I learned what it means to be apatient advocatemany years ago, when my dad was sick. We knew something was terribly wrong with this tall, strapping man when he started to lose weight and was continually fatigued. Our frustration grew as each time he went to the doctor, he came home with instructions to quit smoking.

Fighting for My Father

Patient advocacy often means working around the doctor, so I found a clinic in Toronto that would perform every test known to man to determine my dad’s illness. Thanks to the Canadian healthcare system, it wasn’t going to cost my dad anything. We quickly learned that he had non-Hodgkin lymphoma. Without early treatment beginning the next week, I believe we wouldn’t have had my dad with us for the 10 years of remission that followed that treatment.

Fighting for My Niece

Just two years later, my family experienced something similar with my then four-year-old niece. Nicole was a truly beautiful, precocious little girl, so when she suddenly became lethargic and whiny, it was alarming. My sister took her multiple times to the doctor, who finally told my sister that she was an overwrought mother. He agreed to make an appointment with a specialist (to occur two weeks later) when blood tests showed that Nicole wasanemic.

I was outraged that anemia in a small child could be considered “nothing serious,” and I refused to let her wait two weeks to see a specialist. I called the Hospital for Sick Children emergency room in Toronto, and they agreed to see her the next morning. Tests done there revealed that Nicole had childhood leukemia. Calcium was already leaching out of her bones, and I believe that had she waited for the appointment with the specialist, she would have been dead within those two weeks.

I began to take patient advocacy very seriously.

Advocating for Myself

Luckily, being your own patient advocate doesn’t always mean fighting with your doctor or other medical providers for care. Often it means being able to ask questions and encourage your doctor to look further for other options.

In advocating for myself, I start from a position of partnership with my doctors. I have a great oncologist who is open to ideas and treatments that I want to discuss. His belief is that there is noalgorithm — or established process — of treatment for this cancer, so we have to make the next best decision.

Showing Gratitude Opens the Dialogue

Preserving my life is my oncologist’s goal, and I am grateful for that. In fact, I am grateful to all my providers who administer care, and I tell them so. I thank them for what they do for me. They truly know how much I appreciate them, and so far none of them has felt threatened when I ask to see another doctor or question the treatment I’m receiving.

When I do broach the desire to review treatment options with another doctor or explore research options, my doctors genuinely know it has nothing to do with my lack of faith in them. I understand my doctors aren’t involved inclinical trialsand don’t always know about trials available in the area.

Be Ready With Options

Asking for other treatments or for a referral to a clinical trial often means you have to do your homework. Many doctors I know try to keep up with all the trials in the area and what other doctors are doing, but if I offer the information, they are willing to work with me to get the best and newest treatment.

Because of my own vigilance, I have been in two clinical trials, I have a research doctor that my oncologist and I turn to when we see progression of cancer, and I have integrated naturopathic medicine into my care.

It’s All About Trust

I trust my doctor, because he is open and willing to work with me on a care plan, and he trusts me, because he knows I have done my homework but still look to him as the authority.

Advocating for yourself takes courage. But as I found with my dad and my niece, it’s also about taking care of the people you love, and that includes me. I have enough courage to do that.

Survive and Shine,

Kathy-Ellen

Illustration: Sally Elford/Getty Images

]]>http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/what-it-means-be-your-own-patient-advocate/feed/0How I Celebrate the New Year With Metastatic Breast Cancerhttp://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/celebrating-new-year-with-metastatic-breast-cancer/
http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/celebrating-new-year-with-metastatic-breast-cancer/#commentsWed, 11 Jan 2017 07:00:34 +0000http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/?p=4152New Year’s Day 2017 found me in Panama City, Florida. The New Year was rung in by fireworks literally right outside my beach-front window. My husband and I had planned this last-minute trip on Christmas Day, and when we couldn’t get flights, we jumped in the car the next day and headed south from Michigan to Florida.

Love them or hate them, New Year’s celebrations come every year. In the past, I sometimes enjoyed the night or, like many people, often found it a letdown: All of the excitement leading up to one moment, only to wake up the next day in the exact same circumstances you were in the year before.

How Cancer Changes Your Life — or Doesn’t

Living with metastatic breast cancer doesn’t change that. What it has changed is what the New Year means to me. I celebrated New Year’s Eve 2013 with a new diagnosis; breast cancer had returned after almost 10 years and had spread to my lungs. I truly didn’t know what that meant for 2014. I didn’t know how many new years were in my future.

Metastatic breast cancer isn’t going away for me, at least not if we don’t find a cure — which has been long promised — but that is another story. That means that on each New Year’s Day since 2014, I have breathed a sigh of relief and felt grateful for another milestone. It isn’t the only milestone, but it is an important one. It is hard to live with terminal cancer and not be aware that each year could be your last. It’s hard not to ring in the New Year without wondering if you will be here next year to do it again.

When I was first diagnosed with breast cancer in 2003, I was committed to not allowing it to change my life. In some ways it did, but for the most part, it didn’t. After treatment, I got the “all clear” and carried on chasing goals and dreams. Of course, I had the added trepidation that cancer could return, in addition to an increased number of doctor visits, but otherwise, as time passed and I moved away from that diagnosis, it became less and less of a threat to me.

That changed when I was diagnosed with metastatic breast cancer. Everything changed. Today, my work, my routine, and almost everything else revolves around continued treatment and the fight for survival. I am vigilant and focused on staying well. On the other hand, I am also pretty set on having a good time and living life to the fullest.

Would we have gone on a last-minute trip had I not been diagnosed with metastatic breast cancer? Maybe, but probably with not so much abandon and with no guilt about having other things to do that were more important.

Each Year Is Precious

Yes, for me, each year is a milestone, as well as each birthday, each holiday, and every Sunday! But each year brings with it new opportunities to be with the people I love, new places to visit, and more days to be bossed around by my dogs. Each year is precious, and I can’t wait for the next one. Well, maybe I can wait for the next one, and the next one, and the one after that. You get what I mean.

We who have been diagnosed with stage 4 breast cancer are given little hope beyond continued treatment, and we’re slowly losing faith that a cure is coming.

So I am so encouraged by organizations like the Metastatic Breast Cancer Alliance (MBC Alliance) that are dedicated to helping people with this terminal disease. This organization, whose members are dedicated to giving hope and making life better for us, brings together nonprofits, patients, advocates, and pharmaceutical companies all working to improve the quality and length of life for people living with metastatic breast cancer.

I am happy to be able to give my fellow metastatic breast cancer patients some great information about the MBC Alliance. Fortunately I was able to interview the chairman, Marc Hurlbert, PhD, to ask about the organization and — more importantly — about an initiative launched this year to support better funding and attention for people diagnosed with metastatic breast cancer.

‘Help Keep Me in the Picture’ Campaign

The MBC Alliance campaign “Help Keep Me in the Picture” allows people living with stage 4 breast cancer to tell their personal stories: to inform those who don’t understand the disease and encourage others living with it. I found the stories poignant and uplifting.

Another key component of the campaign is a petition to gather data and statistics on people living with metastatic breast cancer and their outcomes.

I asked Dr. Hurlbert what the benefit of these initiatives is for someone like me who’s in the throes of battling this disease.

“Together, the campaign and petition share the goal that with better data on the numbers of people living with MBC — and the outcomes — we will be able to more [adequately] advocate for increased research funding and increased MBC-focused services,” he says.

Hurlburt went on to say, “It is impossible to effectively advocate for people with MBC without the key statistics and epidemiological data.” The alliance hopes that this information will help increase funding for much needed research.

I have to admit that the idea of better funding and services is truly exciting. I know how much we need more research, and access to drugs and services.

Tools to Help You Find Services and Clinical Trials

I was also curious to know what strides the MBC Alliance has made since its inception in 2013. Hurlbert was able to point to a landscape analysis they did to review research and services that were already available, and how they were being used. The alliance then created a tool on its website listing services and support groups available so I and other breast cancer patients can find them in one place.

Another exciting project the alliance took on was to create a search engine with clinical trials for people living with MBC. As someone who has researched extensively and been able to be involved in one, I am especially thrilled that this will make it easier for others to find trials that could benefit them.

Thankfully, Marc Hurlbert and his cohorts are working on our behalf. It’s not only encouraging — it’s also comforting to think that I and others like myself with stage 4 breast cancer have not been set aside while emphasis is placed on prevention and early detection. After all, finding breast cancer early doesn’t guarantee it won’t return and spread. Everyone can rest easy if we could finally say that no one has to die from breast cancer.

So get in the picture!

Survive and Shine

Kathy-Ellen

PHOTO CREDIT: Edi Caves/Getty Images

]]>http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/pinktober-stage-4-breast-cancer-awareness/feed/0What ‘Taking Care of Yourself’ Means When You Have Metastatic Breast Cancerhttp://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/what-taking-care-yourself-means-when-you-have-metastatic-breast-cancer/
http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/what-taking-care-yourself-means-when-you-have-metastatic-breast-cancer/#commentsThu, 11 Aug 2016 07:00:32 +0000http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/?p=3369People who call to check on me often end the conversation by saying, “Take care of yourself.” I have said this to others battling their own conditions. Lately, though, I’ve been questioning what the expression even means.

Putting Myself First

Immediately after being diagnosed with metastatic breast cancer that had spread to my lungs, I spent almost a month in the hospital with a tube in my chest. When I got home, taking care of myself was a real priority.

No one asked anything of me, and friends and family rallied together to focus on my getting better. I didn’t question my need for self-care. I rested when I needed to, I booked oncology massages, and I indulged myself with good books, scented candles, and fabulous body lotions.

During the first year, I didn’t question taking time off from work or choosing organic foods for my meals. There was no guilt in saying “no” to any request or demand for my time. That was my idea of taking care of myself at the time.

Sliding Back Into Old Habits

Things have changed over these past two years, and now I find myself wondering how to take better care of myself while meeting the continued demands of everyday living. The threat of my dying isn’t looming as large over me, and maybe that’s what has changed.

Feeling better takes away the urgency to take care of yourself.

The urgency that propelled me to focus on my health and welfare has lessened. Although cancer is still on my lung, sternum, and interspersed in my spine, I am basically asymptomatic. Like many people living with metastatic cancer, if I didn’t tell you I had it, by looking at me you would never know. As for me, without major symptoms, I have nothing to complain about and seemingly no excuses, so I focus on life the way I used to — taking care of those around me at the peril of my own needs.

Feeling Joy in Caring for Others

Maybe that’s the root of the problem: I have had a lifetime of putting others first. No, I am not a martyr, nor am I as good a Christian as I would like to be. I am just one of those people who fell into the role of caretaker. It is more comfortable for me to concern myself with the welfare of others. I am happier, it seems, when I am ensuring the comfort of family and friends.

I love being a mother, and now that my own kids are grown, I look for others to mother. Maybe that’s part of my joy in being a nurse: I genuinely enjoy taking care of people, loving and nurturing them.

I know the problem; now how do I fix it?

One thing I have trouble with is the simple task of grocery shopping. With a husband and son at home, I often leave the organic Brussels sprouts (that I know they won’t eat) at the store in favor of the green beans that are my husband’s favorite. I eat more red meat than I like just because my husband is cooking it. These choices have slowly crept in and taken over.

Recommitting to Self-Care

Fighting cancer is still my main priority. I will have to take the journey back to self-care. It will need to be my focus and job for a while. Scans show that cancer has a firm hold on parts of my body, and I will need to take care of myself to stay as strong and healthy as I can.

That journey may involve learning to love my body — but that is a whole other issue.

Survive and Shine,

Kathy-Ellen

Illustration: Doris Charest/Getty Images

]]>http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/what-taking-care-yourself-means-when-you-have-metastatic-breast-cancer/feed/0Why I’m Trying to Find Spouses for My Sonshttp://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/celebrations-are-bittersweet-when-living-with-metastatic-breast-cancer/
http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/celebrations-are-bittersweet-when-living-with-metastatic-breast-cancer/#commentsThu, 28 Jul 2016 19:16:45 +0000http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/?p=3348These past two months have been a whirlwind of wonderful celebrations. In June, we celebrated my eldest son’s graduation from college, and I held a surprise birthday party for my husband. This month, we’ve been involved in a wedding and preparing for another wedding in August.

Last week’s wedding was for a dear young man whom I consider a son, Adam, who married Maja. He and his twin brother, Chris, lost their mother to cancer when they were 10 years old. I had the privilege of knowing her and taking those boys under my wing during that time.

My youngest son was the best man, and the wedding couldn’t have been more beautiful. I had the opportunity to walk the groom down the aisle and give a speech about their mother. An aunt read a letter the mother wrote to her son, the groom, before she died.

Truly heart-stirring moments.

Missing Out on Special Occasions to Come

Right after that wedding, I hosted a shower for another bride, who is getting married in August. I had so much fun planning a garden tea party, but we had to move indoors because of rain. The mother of the groom came and truly blessed this young woman who was marrying her son.

It made me think of the fact that I will never be the mother of the bride, and if my boys don’t hurry — aside from being the surrogate at this past wedding — I won’t get to be the mother of the groom, either. (My son Taylor is on the left in this picture, with Adam and his twin brother, Chris.)

The wedding and other events were all precious, but bittersweet. With neither of my boys even thinking about marriage, I was reminded that living with metastatic breast cancer meant that someone might have to give a speech about me at their wedding. Even while planning the celebration for my son’s graduation, I thought about the grandchildren’s graduations I might miss — grandchildren I might never meet. The joy of celebrating these life events is often shaded by thoughts of missing out on those to come.

Why I Want to Make Things Go Faster

To be honest, though, I’m not saddened by this; I’m too busy trying to make things go faster. I nag my boys, ages 27 and 25, a little too much about finding a nice girl. I’ve suggested several choices, and even point out girls in restaurants and in malls. I get the usual eye rolling, but when one of my sons blushes if a girl says something sweet or tries to flirt, I know that I’m on the right track.

The problem is that no one in my family sees the urgency. They’re convinced that I will be around for a long time — and I love their faith. So pretty much, I’m on my own in this quest. Believe me when I tell you that it can look creepy when a middle-aged women is trying to pick up young girls. It’s pretty awkward even when I highlight to these young women that I have two single males to marry off.

I love celebrating life’s special occasions. I’m the one who takes too many pictures, has to engage every guest, and needs to make a speech that stirs up emotions. I can’t fathom how my family and friends will manage without me. The moments we have now may be bittersweet as I think about missing out on future celebrations, but my plan is to get as many in as I can in the near future, even if that means finding wives for my boys myself.

Survive and Shine

Kathy-Ellen

Illustration: Alberto Ruggieri/Getty Images

Photos: Courtesy of Kathy-Ellen Kups

]]>http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/celebrations-are-bittersweet-when-living-with-metastatic-breast-cancer/feed/0More Bad News?! How to Stay Calm With Metastatic Breast Cancerhttp://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/bad-news-stay-calm-metastatic-breast-cancer/
http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/bad-news-stay-calm-metastatic-breast-cancer/#commentsFri, 15 Jul 2016 06:00:10 +0000http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/?p=3321I’ve received a lot of bad news since being diagnosed with metastatic breast cancer almost three years ago. Mostly it comes after scans that show the cancer has progressed, and the treatment has stopped working.

It’s a repeating pattern: Things go well for a while — the treatment works and there’s no progression — and then the cancer fights back.

It happened again last week when the dreaded MRI showed cancer spread throughout my spine. Unfortunately, we didn’t have a previous MRI to compare it to, even though PET and CT scans had shown the cancer had spread to my spine last November.

Still, the extent of the cancer was not great news. But as a life and wellness coach, I have helped others deal with setbacks, so I was able to use the formula I recommend to others to help myself.

Take It as Information

Bad news is just that — news. It is informative. If you look at it as information that will help you make decisions, you feel empowered. That is exactly how I felt when my doctor and I reviewed the MRI report.

It certainly didn’t feel good to know there are two large lesions on my spine and smaller spots throughout, but it did mean that I now know what we are dealing with. It meant that cancer was no longer a stealth attacker. I knew what was there, and I could respond.

Take Action

Once I had the information, I could consider my options. Fortunately for me, I have an oncologist who is open to accessing the best resources and advice before discussing treatment plans. He suggested that I meet with the research doctor at the nearby university medical center who had involved me in a past clinical trial. I also had reports printed to take to my naturopath and to review myself.

After input from these sources, my oncologist and I determined that because the level of cancer markers in my blood didn’t increase, and the recent CT scan showed smaller lymph nodes, perhaps the progression of disease wasn’t as critical as we thought. Perhaps the lesions had been there for the past several months, and present treatment was keeping the cancer at bay. So that meant no treatment changes for now.

Don’t Dwell on It

The Oxford dictionary definition of worry is “to allow one’s mind to dwell on troubles.” My sister and I laugh about this; to us, it sounds so funny.

So the simple solution is: Don’t allow your mind to dwell.

The coaching advice I give is to keep a worry journal. Write your worries down in a book as they come to you. Then close the book and set a time when you will take the book out, read through your worries, and worry. You can even invite friends to worry with you.

I know that sounds silly, but it helps to shed light on the fact that worrying is silly. Really, as it says in the Bible, “Who by worrying can add even one hour to their lives?”

Taking these steps helped me to stay calm and feel empowered. When the outcome of all the tests and discussions suggested we could continue my current treatment regimen, I was encouraged and have to say it was good news.

Bad news is inevitable, but I, for one, am in charge, and I am determining how I will deal with it. I won’t let it deal with me.

Survive and Shine,

Kathy-Ellen

Photo: Sami Sarkis/GettyImages

]]>http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/bad-news-stay-calm-metastatic-breast-cancer/feed/0Cancer Is Scary, but It’s the MRI Machine That Terrifies Mehttp://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/cancer-scary-mri-machine-terrifies-me/
http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/cancer-scary-mri-machine-terrifies-me/#commentsFri, 08 Jul 2016 08:00:16 +0000http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/?p=3306I mentioned in last’s week blog that I don’t scare easily. Well, that might not be completely true. I have two real fears — and they are major!

For one thing, I am totally afraid of falling off a cruise ship. I am convinced that someone falls off a ship on every cruise. I can’t imagine anything more terrifying than finding yourself in the middle of the ocean, with the big boat you were on moving off into the horizon without you.

My Biggest Fear

I am terrified of the MRI machine. I don’t believe I have ever been claustrophobic, but I sure am when I’m in that tube.

This phobia developed after two previous tests. I have even said that I would rather die than have another MRI scan, but apparently, I won’t get the chance. I am subjecting myself to another MRI tomorrow. Why? Because Dr. Khan, my oncologist, wants a skeletal MRI scan to review how extensive the bone metastases are.

I am dealing with it by telling everyone. (So much for keeping my fears to myself.) My sister is coming from Toronto to go with me, and my friend Cheryl is taking the morning off from work.

I can’t take my husband, because he’s not good at waiting. His restlessness while sitting in waiting rooms makes me crazy, and besides, I’m not sure that he really stays in the clinic while I am undergoing the test — although he says he does.

Living With Metastatic Breast Cancer Is Scary

There’s a lot to fear when you’ve been given a diagnosis of stage 4 breast cancer. Surprisingly, I fear very little about it. It was more scary thinking about it returning after the initial, early-stage diagnosis more than 10 years ago.

Now that it’s returned and spread, I am relatively pragmatic about it. I’m not even afraid of dying, although I’m fighting hard to put that off for a while.

Which brings me back to the MRI.

Facing scary treatments and tests is part of dealing with the disease. I know most of us do it because our lives are worth fighting for. But truthfully, living with an incurable terminal illness is a hard thing. It consumes a lot of time. It takes its toll on your body, your emotions, your finances, and your hopes and dreams. It is just tough.

Prayers Help

I am trying to be a strong, brave girl. I want my friends and family to be proud of me and the way I am still living my life. But sometimes even big girls need help with the scary things.

I have asked for a lot of prayers to help me with the MRI test tomorrow, and I think the prayers are really working. I can feel some of the anxiety easing, but not enough that the prayers should stop — and not enough that I won’t take the Valium that the doctor prescribed for the test.

I can survive cancer; I’m pretty sure I will survive the MRI.

Survive and Shine,

Kathy-Ellen

Photo: Getty Images

]]>http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/cancer-scary-mri-machine-terrifies-me/feed/0Emotional Distress: It’s Inevitable When You Have Metastatic Breast Cancerhttp://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/emotional-distress-inevitable-metastatic-breast-cancer/
http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/emotional-distress-inevitable-metastatic-breast-cancer/#commentsWed, 29 Jun 2016 06:00:04 +0000http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/?p=3285This has been a tough couple of months. I’m finding it a challenge to figure out how to have purpose and direction while living with an incurable disease.

In fact, the biggest problem has been how to plan for the rest of my life when there might not be a “rest of my life.”

For the most part, the cancer is under control. I have been fortunate to be asymptomatic, with only a few bouts of intolerable pain to deal with. The source of that pain was recently discovered on a CT scan, when the report showed that a fractured rib was healing. Until the doctor read that to me, I had no idea that I had fractured a rib.

So beyond the few surprises that cancer brings in its wake, I truly feel that I am dealing with that aspect of my life pretty well.

The emotional pain and suffering is what has been hindering my life’s fulfillment. It has been brought on by two main factors:

One, I am struggling with what to do with my life and how to make plans when nothing is getting back to normal; there is no getting over this.

And two, I am battling depression and the effects of prolonged emotional distress from dealing with treatment options and setbacks.

The Shadow of Terminal Cancer Never Goes Away

I am tough. Seriously, this isn’t just me saying it. My family and friends will cite this as one of my main character traits.

But with cancer, toughness can be a liability. It means that I am used to plowing through my own issues. It means that I don’t scare easily, and when I do, you are not going to hear about it. It also means I may not ask for the help I need and may instead focus entirely on making things better by myself.

The hard truth about living with metastatic breast cancer is that there is no plowing through to better times. Things never go back to the way they were. The overshadowing doom from terminal cancer doesn’t go away.

So for the most part, I let it hover over me like a shadow and declare sunny days regardless. After a couple of years of this, though, my emotional self can use a little boost.

Giving Up Plans for the Future

So why have I been struggling? Because this is real. I am living with terminal cancer, and unless a cure is found, I will not survive it.

But that is not the part that has plagued me. It is having to give up the retirement plans that my husband and I worked hard to create for our future. It is knowing that I can’t just carelessly move to a deserted island where there is no ongoing treatment for cancer. It is wondering if I will see my sons’ weddings and meet my grandchildren.

It is knowing I can’t take any part of my life or future for granted.

What Is the Bright Side?

So here is how I am getting over it: I am reminding myself daily of the good things. I love my life. I have wonderful people and two devoted dogs. I have a big God and a good sense of humor. What else could I possibly need?

]]>http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/emotional-distress-inevitable-metastatic-breast-cancer/feed/0Do I Dare Connect With Others Living With Metastatic Breast Cancer?http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/dare-connect-others-living-with-metastatic-breast-cancer/
http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/dare-connect-others-living-with-metastatic-breast-cancer/#commentsMon, 09 May 2016 03:00:11 +0000http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/?p=3248Last month, I had the opportunity to attend the HealtheVoices16 conference in Chicago. I attended last year’s conference as well, in New Jersey, and I have to say that both times, I was overwhelmed by how well I was treated and by the quality of the speakers and workshops.

This conference is probably the only one like it that brings together patient advocates and bloggers who are using social media to connect with other patients. The aim of the conference is to inform and empower us to keep using our voices.

Deeply Rooted Connections

The theme of this year’s conference was Deeply Rooted Connections. I know that social media has allowed me to develop deeply rooted connections with fellow bloggers, advocates, and activists, as well as other breast cancer warriors. The fact that the conference is aimed at helping us build those connections is exceptional.

I made new connections this year and renewed old ones. I got to put faces to the blogs that I have tuned into and was especially happy to finally meet face to face with Rose, the wonderful editor who started me blogging in the first place.

I was inspired by many of the attendees who are suffering from other chronic diseases and conditions and who want to share their stories to encourage and inform others. I learned something from each one of them and was in awe of their strength and commitment.

Ups and Downs of Social Media

For me, social media has its ups and downs. There is a whole online community of others like me living with metastatic breast cancer. Some days it’s truly empowering to connect with these people and celebrate their good test results or hear about the fun things they are doing with family. Other days I am just sorry that I even got on Facebook or Twitter.

On those other days I learn of people we have lost from our community. Often, they are beautiful young women who had profile photos of smiles and hope. They are mothers and sisters who won’t be here to post news of birthday and holiday celebrations for the rest of the year or years to come. I am truly affected by their loss.

Sometimes I have to ask myself: Do I really want to connect and make friends with others who might die? Every time I ask it, though, the answer is the same: Hell, yes! These are sensational people who have fabulous lives worth sharing, and I gain something from each of them.

Hope, Love, and Joy Versus Fear and Loss

The “something” I gain — their hope and their love and joy for life — far overshadows the doom I feel in knowing I could die from breast cancer, too. Each one of them has something so powerful in her voice, I can only be grateful that I heard it, even if only for a short while.

In the past year we have lost so many smart, loving, gifted people, who will forever leave their mark on my life and my Facebook page. Most of them I have never met face to face and may never meet in this life.

That is what the eternal life is for. On the bad days I remind myself of that and thank God for these deeply rooted connections while I am here.

Survive and Shine,

Kathy-Ellen

Author’s note: The HealtheVoices conference was the brainchild of Janssen, a pharmaceutical company that partnered with Everyday Health to make it happen. Janssen paid for all my travel expenses, but the opinions expressed here are my own.

Illustration: Neil Webb/Getty Images

]]>http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/dare-connect-others-living-with-metastatic-breast-cancer/feed/0Don’t Believe These 3 Myths About Living With Cancerhttp://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/myths-about-living-with-cancer/
http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/myths-about-living-with-cancer/#commentsTue, 08 Mar 2016 03:00:59 +0000http://www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/?p=3086When people find out that I have stage 4 terminal breast cancer, they have varied reactions. Some are saddened and compassionate, some are concerned and curious, and others, because of their own fears, need to find an explanation — a way to feel in control.

This often leads to myths about living with cancer that can be insulting to those of us who are battling the disease.

Let’s examine the truth behind three of these myths:

Myth #1: If you are a positive person with a great attitude, you won’t get cancer.

My father, mother, and niece all battled cancer. My parents were anything but people who gave in or gave up. They each had an exceptional sense of humor, loved life, and loved each other. My niece was a 4-year-old happy, precocious child when she battled leukemia. Now, as a mother and wife living with a BRCA2 gene mutation that puts her at higher risk of breast and ovarian cancers, she is a positive force that can light up a room like fireworks.

I have faced my share of tough times. I credit a positive attitude and my faith for seeing me through. I don’t even see cancer as the worst thing that has happened to me. Most of the women I know who are also afflicted with this disease are among the most brilliant, bright, positive women I know. Perhaps only bright, upbeat, positive people get cancer — there is no other explanation.

In truth, we know that there are environmental and genetic factors that affect a person’s risk for developing cancer. To believe that someone is somehow less than positive, or not optimistic or enthusiastic enough, is insulting — especially to those precious people who have lost their lives to cancer.

No one brings this disease on themselves, and for sure, none of us were able to prevent it with our great attitudes.

Myth #2: Cancer is a gift or a blessing.

Do people really believe that those of us living with cancer feel we have been given a gift? We may — in our positive, upbeat fashion — look on the bright side and talk about life in ways that those not living with a death sentence may not, but truly, we are not blessed to have cancer.

Cancer doesn’t make us better people. Without it, most of us were already pretty great. It has brought our strengths and brilliance to the forefront. It has challenged us to live every day while battling silent thoughts of death and doom. This makes us people who are thriving in the midst of adversity. This makes us special because we have no other choice, but no one prays to get cancer.

People who live with cancer are to be credited with shining through this dark time because we are gifted within ourselves — not gifted by cancer.

Myth #3: If you eat right and take care of yourself, you can be cured.

Some people thoughtlessly throw out dietary suggestions and tell us about alternative methods as though we couldn’t possibly know about them already. I love the thought that we only need to eat vegan or exist on juice and supplements to be cured. But it’s a myth that if we had only eliminated dairy, meat, preservatives, and inorganic foods, we wouldn’t have cancer.

There are many people that I can point to who actually did this and still succumbed to the disease. I was a very healthy, clean-eating 44-year-old when I was first diagnosed with breast cancer. I never smoked, didn’t drink, exercised regularly, and ate no red meat. I even did better after treatment was over. Still, cancer metastasized 10 years later.

I do advocate for clean eating, organic vegetables, and an active lifestyle for those battling cancer. That is because we need to be strong and healthy to weather the ravages of the disease and its treatment. Research does show that a healthy diet and lifestyle may also reduce your risk.

But believe me, many health nuts have been diagnosed with cancer, and many of us — regardless of lifestyle — haven’t been cured. I will admit, though, that knowing life may be short, I sometimes give in to cravings, and I don’t feel guilty about it!

The best response you can give to anyone diagnosed with the disease is kindness and compassion. The best gift you can give to yourself is knowledge about the disease. Clinging to myths is neither preventive nor curative. Trust me — I’m a nurse.